About One in 100 Kids On Autism Spectrum

When actor John Travolta recently revealed in court, apparently for the first time in public, that his late son Jett had been autistic, he confirmed what many had speculated even before the 16-year-old's untimely death in January.

Travolta may have preferred to keep his son's condition private, but researchers rely on other parents of kids with autism spectrum disorder (ASD) to share that information in hopes of getting a handle on just how common ASD is.

Research published this morning in the journal Pediatrics reveals that in the U.S. in 2007 about 1 in 91 children ages 3 to 17 were somewhere on the autism spectrum. That's more than any previous survey has found, and the numbers put some muscle behind the push to better understand and treat the condition.

Researchers spoke by telephone with parents or guardians of more than 78,000 kids in that age group and asked whether a physician or other health-care professional had ever told them their child had autism or any related condition such as Asperger's disorder. Just over 1,400 answered "yes."

About half of those who said their child had ASD characterized it as a mild case. The numbers also supported the current understanding that ASD is far more common among boys than girls and among white children than black or Hispanic kids.

Parents also were asked whether their once-diagnosed child still carried that diagnosis; nearly 40 percent said they no longer did (leaving just over 900 reporting that their child currently had ASD), which suggests that many may have been misdiagnosed from the start. That finding helps demonstrate the difficulty of pinning ASD down; though the numbers in this study suggest the phenomenon has grown, it remains unclear whether that growth means more kids have ASD now than have before or whether we're just getting better at diagnosing these disorders.

Still, knowing that nearly about one percent of U.S. kids have ASD adds urgency to efforts to find ways to treat and even prevent autism. One such major effort is already in the works: The federal government's stimulus package included $92 million for research into the genetics of autism.

In the meantime, knowing the extent of the situation helps us assess -- and plan to accommodate -- the enormous private- and public-health costs associated with ASD. The new study cites earlier research showing that the life-time medical cost of dealing with ASD is $1.6 million; other research cited says ASD-related costs borne by the health-care system rose 142 percent from 2000 to 2004.

So even if you've never met a child -- or an adult -- with ASD, you've got plenty of reason to care about the condition, if not just out of compassion then certainly for concern over costs.

It's not just research on the causes that is important. We need to plan for how to help all these individuals live as independant a life as possible. Autism doesn't go away when the kids are no longer cute 4 year olds. What will happen to the autistic teenager/adult? We as a country have made great strides to assist the cognitively disabled to live independant lives. I can only hope we have similar success for the ASD population.

My own son who was diagnosed with Aspergers has recovered and fully functions at a high level in society. He still, at the age of 25, has some social difficulties, but some who have no medical condition do too.

There is no such thing as a genetic epidemic. They need to stop wasting money on genetic studies and do an independent study of vaccinated vs unvaccinated chilren for once and all. These genetic studies will go on and on for years and accomplish nothing,
It is also not true that studies have not turned up a link between autism and environmental exposures. Investigations that show no link have been done mainly by the CDC, and other governmental agenices that have a big stake in the safety issue of vaccines and there are major conflicts of intererst.

Posted by: Maurine Meleck | September 30, 2009 at 07:59 PM

Having had all of my son's genes run at Children's and they didn't find anything, I know that concentrating solely on genes is such a huge mistake. Many studies have come out on different evironmental influences of genes and gene regulation. Not enough environmental trigger research is being conducted. Viruses, vitamin D levels, heavy metals, bacteria, and other toxic chemicals can change the genetic regulations entirely. Putting so much money soley into genetics is only going to equate to a cat chasing it's own tail. Autism is not a neurophyciatric disorder, it's a neuroimmune, or immocompromised disorder involving the whole body, and multiple systems including the brain. A medical condition, not a mental condition and until mainstream medicine begins to understand this they will not be finding any medical treatments of value to those of us whose children desperately need them to. So please, stop chasing your tails, find out how and what environmental influences are changing expression and causing the neuro, multi system, inflammatory conditions these kids have and then figure how to fix their Medical condition brought on by those environmental triggers.

"Having had all of my son's genes run at Children's and they didn't find anything, I know that concentrating solely on genes is such a huge mistake."

This doesn't make any sense. First, there is no such thing as running "all of someone's genes". Even if they would completely sequence the whole genome of a particular patient, since there are still no known genes associated with autism, there would be nothing to check against. These kind of genetic studies are very difficult and involve analyzing complete genomes of thousands of patients and healty people looking for differences. Very often many genes are involved, that might interact with each other, and that makes finding a set of candidate genes very difficult (but not impossible).

What other "genetic" disorder has ever increased at such an exponential rate and what other "genetic" disorder has a forty percent recovery rate as reflected in the Pediatrics report?

This is environmental, whether or not it is vaccines, plastics, tap water who knows for sure. But it's time to start getting angry about it and demanding answers.

Come on if one out of 91 kids started getting hickups for no reason parents would be freaking out, we are talking about children like my son that may not live an independent life as an adult, and who is going to pick up that rock and carry it up the mountain? You are with your hard earned tax money. Think about it, what's caused the rise from 1 in 10,000 twenty years ago to one in 91? It's not genetics, it's not better diagnostic skills, if a kid can't talk he can't talk, won't interact with others no matter what you do, something is off right, 20 years ago or yesterday it's not that hard to tell someone is autisitic or not. This is environmental and when you look at our vaccine schedules, 35 vaccines today versus 8 twenty years aog, you begin to think vaccines, you have to.

And those of you thinking vaccines are safe need to read the warning labels and research the ingredients of these vaccines jabbed into our kids. Vaccines can kill some people and they have, so why is it not possible that they can cause a neurotoxin injury that results in autism?

Ugh, another chance for the anti-vaccine crowd to come out and tell us how vaccines cause autism. I might as well be a voice of reason here.

First, ogs123 is absolutely correct about genetics. Genes interact with each other and the external stimuli in a huge variety of ways that we barely understand. It is likely that autism involves a particular constellation of genes (also see point #2 below). No one gene causes autism the way that Huntington's Disease is caused by a specific set of mutations in a particular gene. This is not unusual in the disease world. Alzheimer's and Parkinson's, to name two, appear to involve multiple genes (except for the familial types, but those are rare).

Second, autism is now called "autism spectrum disorder" for a reason. That recognizes the fact that "autism" is probably not one single disorder but rather a collection of disorders that manifest themselves in similar, but not quite the same, fashion. Therefore, the "cause" for autism is not a single factor either because there is no single thing as "autism". It may be that (to go back to the genetics issue) a variety of genes are involved and when you have mutations in 6 genes, you end up on one part of the spectrum, but when you have mutations in 5 genes, you end up on another part. Or, you really could have completely different disorders with completely different etiologies that happen to manifest themselves with similar symptoms.

Third, despite how the media spin this, "autism" is not actually increasing -- just the diagnosis is. Most children being currently labeled with the autism would have, in the past, either been described as simply a little "strange" or as "idiot savants" (think Rain Man) or simply as having mental retardation. If you are curious, there are plenty of people who have examined the data and you could certainly find the publications out there on this. Unfortunately, the popular media don't bother reporting on this because it's much more exciting (and terrifying and, therefore, likely to get more people watching the news or reading the article) to say that autism is increasing.

Fourth, the studies on vaccinated vs. unvaccinated have been done -- ad nauseum -- and shown that there's no relationship between vaccinations and autism. When you consider point #3 above, you realize how silly the vaccinated vs. unvaccinated argument is.

My beef with the austism movement is that the "spokespeople" are so busy screaming about vaccines and thiermasol that they drive away anyone that disagrees with them.

Loads of things are different now than 20 years ago. let's see:
Aspartamene
Cell phones
Cable TV in everyone's homes
Baby Einstein
NICU visits and medical interventions at birth

It's not all vaccines.

Also--this hysteria around vaccines diverts attention and money away from treating those who are ALREADY autistic! Don't these so-called spokespeople care about better therapy? Ending discrimination by the insurance companies against auties? (My insurance won't pay for therapy, because they define all autistics as "maintenance therapy" patients. Automatic denial.)

I have an autistic kid and frankly, I'm more concerned with helping him where he is now (and trying to pay for OT & speech out of pocket) as opposed to worrying about how he got that way.

Autism has always existed, in one form or another. There are probably several genetic causes. It is not due to bad parents or power lines. In the past, it was merely called something else, denied, hidden, or solved by starvation, pneumonia, asylums, or "accidents."

The diagnosis will expand to the extend that it entails no cost or qualifies one for aid or therapy. If disorder were labeled "demonic possession due to parental sin" and qualified for no aid, but instead public shame, you can bet the diagnoses would be few. That view, whether in religious or Freudian garb, pretty much prevailed up into the 1990s.

If some victims can learn to clothe and bathe themselves by age 10, then perhaps some public aid is appropriate. Beyond that, there must be some cost controls and realism. The lifetime cost of support cannot be a multiple of a normal person's lifetime earnings.

To sue the pharmaceutical companies or utility firms will enrich some attorneys but not solve the problem.

My son is likely to receive an Asperger's diagnosis this month. He's borderline, but definitely affected. In his case, I'm completely convinced of the genetic link. I think that somewhere around half of my extended family, at least three generations back, would have an Asperger's diagnosis and most of the rest are "eccentric." Yet my son will be the first of any of us to receive an evaluation, let alone a diagnosis.

I would love to know if there is a correlation between age of the mother at delivery (35+) and the incidence of autism. Seems to me that much of the rise in autism over the last 30 years coincides with the commensurate rise in the number of women having children later in their lives/after 35. Also, has autism become a catch-all euphamism for all forms of retardation. Parents would rather say their child is autistic instead of having some form of mental retardation. Doctors might like that diagnosis, too.

My guess, based on knowing lots of children with autism and their parents, is that if they had asked an additional question: is there any history of developmental delays in your family -- they would have discovered that $92M for genetics research is a complete waste of time.

There clearly are environmental causes for the vast majority of autism.

"'autism' is not actually increasing -- just the diagnosis is..." So how is that the incidence has increased from 1 in 150 to 1 in 91 -- with NO change in the diagnostic criteria? AND, how did the teachers, doctors and parents of children 20 years ago miss 97% of the cases of autism?

"the studies on vaccinated vs. unvaccinated have been done -- ad nauseum" HUH??? Check your facts -- this has NEVER been done. All the studies that allegedly exonerate vaccines were comparisons of a group that got one set of vaccines with a group that got difference vaccines.

Begging your pardon rlalumiere, the California study proves that autism's numbers cannot be explained away by artificial factors, such as misclassification and criteria changes, according to the results of a large statewide epidemiological study.

Published in the January 2009 issue of the journal Epidemiology, results from the study also suggest that research should shift from genetics to the host of chemicals and infectious microbes in the environment that are likely at the root of changes in the neurodevelopment of California's children.

The methodology eliminated migration as a potential cause of the increase in the number of autism cases. It also revealed that no more than 56 percent of the estimated 600-to-700 percent increase, that is, less than one-tenth of the increased number of reported autism cases, could be attributed to the inclusion of milder cases of autism. Only 24 percent of the increase could be attributed to earlier age at diagnosis.

"These are fairly small percentages compared to the size of the increase that we've seen in the state," Hertz-Picciotto said.

Hertz-Picciotto said that the study is a clarion call to researchers and policy makers who have focused attention and money on understanding the genetic components of autism. She said that the rise in cases of autism in California cannot be attributed to the state's increasingly diverse population because the disorder affects ethnic groups at fairly similar rates.

"Right now, about 10 to 20 times more research dollars are spent on studies of the genetic causes of autism than on environmental ones. We need to even out the funding," Hertz-Picciotto said.

And

The identical twin study on autism was Folstein & Rutter (1977). It found a concordance of 36% in identical twins. The number usually cited for concordance of intelligence in identical twins is 80%. This, of course, must depend on the IQ range used to determine concordance. Aggregating various studies, there's about 87% concordance in identical twins reared together, 76% in identical twins reared apart, and 56% in fraternal twins reared together. Autism concordance in identical twins is not 100%, which suggests there is high probability that some kind of environmental influence in autism etiology.

I do try to add links to the studies when they're available; not doing so this time was an oversight. You need a subscription to Pediatrics to read the full study, but here's a link to the abstract; I'm adding it to the blog, too:

Before they do any sort of study they beed to actually define and make divisions between the different types of conditions in ASD.

From there, look at each type seperately for study to see what patterns are in the data.

Is there a genetic component...yes....but you dont need the genes to get it. There are also evironmental and chemical factors in play.

Is it the vaccine that caused it???? No...not by it alone. But they really need to study these claimed cases and try to see if their is something that stands out. Is it a genetic marker? Is their something common in their diet? I look at the vaccine similar to people who are allergic to penicilin....similarly these kids who are "allergic" to the shot and if they are given it it can be deadly or cause damages.

On both sides of my family I have autism. My cousin had it when she was born and it was the classical type that everyone could see. On my other side of the family I have a cousin who contracted it as a result of the vaccine. His case fits the case of before the shot he was fine and after the shot he wasnt.

I also likely have on one side of my family a genetic form of aspergers.

to Jennifer and her editor- If 900 kids out of 78,000 have ASD, that is more than 1%. I mean, 1 in 91 kids is not "Nearly" one 100, it is MORE than one in 100. Just a point of math. Thanks for the article.

Individuals with autism recently have been found to have deficits of mirror neurons which are necessary for the capacity to put oneself in another's shoes, in other words, the capacity to experience empathy and compassion.

I believe findings that the incidence of autism may be of epidemic proportions should be heard as a serious threat to the nation.

It has been postulated that over the past several decades many children with autism have been described by their parents as "having grown out of it." That is, as they grew up, they showed no serious evidence which justified a trip to the doctor's office. Most evidence of a lack of empathy and compassion is easily missed, overlooked or ignored in families, schools and the workplace.

However, it is possible that these children, many of whom are now adults, continue to be somewhere on the autism spectrum, that is, they continue to have mirror neuron deficits, and therefore, although intellectually competent, continue to experience degrees of compassionlessness.

Regardless of the ultimate etiology, it does not seem inappropriate to hypothesize an association between the rise of the incidence of autism spectrum conditions in the general population and the rise of the incidence of compassionlessness in America.

This is a subject for serious consideration in light of the potential threat it poses to national security.

Newsflash on autism: there is no one autism, there are multiple autisms. Multiple forms of causation, multiple degrees of severity,multiple manifestations, multiple prognoses. The parents who said their kids had autism but do not now were not wrong and those kids were not misdiagnosed. Kids are recovering from autism if they have the less severe types and if it's remediated early enough and environmental factors are addressed. But of course, that doesn't square with the genetic epidemic whose incidence has gone from 1/10,000 to more than 1/100 in less than 25 years, does it? And it doesn't square with the dogma that autism is incurable, untreatable, a lifelong affliction that children are born with. My son was diagnosed with PDD-NOS at 19 months and now at 4 is hurtling towards becoming completely neurotypical -- social, outgoing, funny, a blabbermouth even. Was he misdiagnosed when he appeared completely and profoundly deaf, with no eye contact and no words? NO.

Probable multiple facts in the origin of autism. Hard to explain the incidences in various ethnic groups in America other than vitamin D level.

We know from studies that 70% of children are vitamin D insufficient. Why not just correct insufficiency in pregnancy and in newborns and infants, and then they can speculate the reason for a drop in the incidence 5 years from now.

There seems to be too many novice researchers posting from their narrow point of view here, I'm going to attempt to not sound like one too.

I thought the article also addressed, in a tactful way, that it is human nature for parents to not want their children labeled as different and put in special ed classes; but over time parents have accepted the unique character of autism and have been more willing to accept the diagnosis. The article said, "Just over 1,400 answered "yes."" Would that number have been lower 20 years ago--regardless of what they had been told by professionals. I suspect that the number would have been lower.

Few people talk about the divorce rate of couples with autistic children or the isolation these parents feel. For some parents of autistic kids, it's easier to live in denial and they then argue that their child should be treated like all other children despite a diagnosis.

While the article discussed many other facets of autism diagnoses, it opened with John Travolta's story, "he confirmed what many had speculated..." I for one am glad to know that the study--based on PARENT responses--reveals that parents may just be more honest about their kids' diagnosis than in the past.

Rlalumiere, regarding your genius Point #3... then what you're saying is, "strange" kids, "idiot savants" and kids that are "mentally retarded" are all increasing in numbers from 1 in 10,000 to now 1 in 91, NOT children with autism?? HUH??????? Can we please grow a brain.

And touche to the other commentor re: the "studies done ad nauseum". Please cite these studies and most importantly, who did them, so that we can all see whether there could be any possible conflict of interest and I guarantee, you won't find any that aren't.